Tuesday, January 25, 2011

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday. He agreed to give me a one-month trial. One month, and if there are any negative side effects, he's pulling the plug immediately. One month, and he would like me to be very honest in my assessment of my symptoms at that point. He was careful to make sure I shouldn't get my expectations up. He emphasized that it was very possible that I will not see any improvement.

I was thrilled. I feel like his approach is the safest and best I can hope for. He is exercising every imaginable caution. He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment. I'm OK with that. I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless? Well, let me reword that. It definitely comes with a price tag. I found out that my insurance doesn't cover the medication, and that it would cost about $1200. For one month. I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options. I can upgrade my insurance, which would increase my monthly premium. I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month. Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see. I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it.

I'm leaning toward a combination of the two. Pay out of pocket now, and then upgrade my insurance if it looks promising. Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning. Why? It's not just the financial stress this will place on us. We've shouldered financial stress before, very successfully, I might add. No, I can't help but wonder, is it worth it? Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities. You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile. And then something like this happens, and the old voices you have spent years silencing rise again to the surface. The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?" I think the answer would be more than a thousand dollars. And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?" I imagine his answer would be close to a million.

Tuesday, January 18, 2011

We are moving to a new home at the end of this month. I am very happy and excited about the move. So many pluses -- it's single story, it has a pool, I can leave so much clutter behind. And yet, there is that dreaded process of getting there.

Oh, how I hate to move! It challenged me to my limits before I got sick. I know I need to pace myself and leave most of the work to my husband, my kids, and my lovely, helpful friends, but still, it is taking its toll. Already the stress is biting in to my sleep. It takes longer to fall asleep, and once I stir awake, there is no way to doze off again. I have that nagging feeling that I should be doing something, even if I know I really shouldn't. I feel the days ticking by like seconds on a bomb. Are we going to make it in time? Is it possible to get this done?

I see an inevitable crash at the end of the tunnel. But I also see a wonderful new place for me to rest and recuperate afterward.

Any tips? I'd welcome any ideas for getting through the next two weeks.

Wednesday, January 12, 2011

Ah, what a day. I went in to get my blood work done. I was pleasantly surprised that the wait was so short -- I only got through the introduction of the book I had brought to read. This is great, I thought.

Not so fast. The phlebotomist had a hard time finding a vein. She kept saying, "You're veins are so tiny" while she poked first my right arm and then my left and then back to my right. She finally took a shot at my right arm, only to get nothing. I imagine she felt the same as oil men do when they dig for oil and come up empty.

She then told me she'd have to try my hand. She transferred me a separate room and had me lie down. She was able to get a trickle from that poke, and bruised me in the process. Finally, she called another technician to give it the ol' college try. That dear woman was able to find a vein in my right arm immediately, popped the needle in, and collected the blood just fine. I sing her praises.

I stayed to rest just a few minutes to make sure it was safe to drive. Forty minutes. It had taken forty minutes to drain four tiny vials of blood from my veins.

Lessons learned:

Drink plenty of water the day before.
Get blood work done in the afternoon when I'm better hydrated.
Ask for a new phlebotomist if the one I've got seems uncertain.

Just think, I'll only have to do this every 1-3 months while I'm on the new medication. :)

Thursday, January 6, 2011

I had my long-anticipated first visit with an Infectious Disease doctor. It went as well as could be expected. He knew a little about CFS, and even less about XMRV. And here I come in, telling him I have CFS and am XMRV positive. What did I expect? That he would turn around and write me a prescription on the spot?

No, of course not. What I expected -- and hoped -- was that he would be open-minded and intellectually curious. Which he was. He gave me a lab requisition to get a baseline, and he told me he would research XMRV before our next appointment, in two weeks. He said he would consider -- CONSIDER -- treating me, based on his findings.

That's all I can ask. I know there is a lot of controversy surrounding treating XMRV. I know that not everyone who tries treatment gets better. I know that it might not work for me. But something in me tells me I have to try, I have to see for myself. If I get better, I am not going to recommend everyone who has tested XMRV positive go out and demand HAART treatment. But I am going to raise my voice like a bullhorn, and let anyone who will listen to me know that something needs to be done. More research. Safer drugs.

It's time to stop sweeping under the rug 4,000,000 people suffering from such a debilitating disease.

About Me

I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.